Analysis of Psychological Symptoms Following Disclosure of Amyloid–Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline
Authors: Camilla Caprioglio, Federica Ribaldi, Leonie N. C. Visser, Carolina Minguillon, Lyduine E. Collij, Oriol Grau-Rivera, Philip Zeyen, José Luis Molinuevo, Juan Domingo Gispert, Valentina Garibotto, Christian Moro, Zuzana Walker, Paul Edison, Jean-François Demonet, Frederik Barkhof, Philip Scheltens, Isadora Lopes Alves, Rossella Gismondi, Gill Farrar, Andrew W. Stephens, Frank Jessen, Giovanni B. Frisoni, Daniele Altomare, Carla Abdelnour, Nuria Aguilera, Leon Aksman, Emilio Alarcón-Martín, Montse Alegret, Silvia Alonso-Lana, Daniele Altomare, Pia Andersen, Majd Arab, Malin Aspö, Ilona Bader, Ilse Bader, Nigel Banton, Frederik Barkhof, Rodrigo Barnes, Dawn Barrie, Mark Battle, Ana Belén Collado, Julie Bellet, Johannes Berkhof, Marine Biger, Cindy Birck, Gerard Bischof, Mercè Boada, Ronald Boellaard, Nenad Bogdanovic, Ariane Bollack, Stéphanie Bombois, Stefan Borg, Anne Borjesson-Hanson, Vladimir Boskov, Justine Boutantin, Claire Boutoleau-Bretonniere, Femke Bouwman, Laetitia Breuilh, Eva Bringman, Baptiste Brunel, Marco Bucci, Chris Buckley, Mar Buendía, Santi Bullich, Anna Calvet, Laia Cañada, Marta Cañada, Camilla Caprioglio, Jorge Cardoso, Jasmine Carlier, Elise Carre, Isabelle Carrie, Pascaline Cassagnaud, Emmanuelle Cassol, Miguel Castilla-Martí, Elodie Cazalon, Tiphaine Chaarriau, Rachel Chaigeau, Taylor Chalmers, Marie-Thérèse Clerc, Montserrat Clerigue, Emmanuel Cognat, Nina Coll, Lyduine E Collij, Peter Connely, Elodie Cordier, Corine Costes, Camille Coulange, Hélène Courtemanche, Eric Creisson, Charlotte Crinquette, Rosario Cuevas, Marie-Noëlle Cufi, Sophie Dardenne, Maria de Arriba, Casper de Costa Luis, Yvonne de Gier, Delphine de Verbizier Lonjon, Veronique Dekker, Bérengère Dekyndt, Xavier Delbeuck, Julien Delrieu, Jean-François Demonet, Vincent Deramecourt, Françoise Desclaux, Carlos Diaz, Susana Diego, Mehdi Djafar, Britta Dölle, Laura Doull, Laurence Dricot, Alexander Drzezga, Bruno Dubois, Julien Dumont, Jean Dumur, Julien Dumurgier, Martin Dvorak, Mirian Ecay, Paul Edison, Claus Escher, Ainara Estanga, Ester Esteban, Guy Fanjaud, Gill Farrar, Karine Fauria, Marta Felez Sanchez, Patrick Feukam Talla, Lisa Ford, Giovanni B Frisoni, David Fuster, Audrey Gabelle, Valentina Garibotto, Sinead Gaubert, Cédric Gauci, Christine Geldhof, Jean Georges, Joseph Ghika, Rossella Gismondi, Juan Domingo Gispert, Elena González, Valerie Goovaerts, Denis Mariano Goulart, Caroline Grasselli, Oriol Grau-Rivera, Katherine Gray, Martin Greensmith, Laure Grozn, Céline Guillemaud, Fiona Gunn, Prasad Guntur Ramkumar, Göran Hagman, Bernard Hansseuw, Fiona Heeman, Janine Hendriks, Jakob Himmelmann, Anne Hitzel, Florent Hives, Merle Hoenig, Claire Hourrègue, Justine Hudson, Jordi Huguet, Marta Ibarria, Ifrah Iidow, Sandrine Indart, Silvia Ingala, Adrian Ivanoiu, Charlotte Jacquemont, Vesna Jelic, Frank Jessen, Jieqing Jiao, Sara Jofresa, Cathrine Jonsson, Dzmitry Kaliukhovich, Silke Kern, Miia Kivipelto, Iva Knezevic, Grégory Kuchcinski, Manon Laforce, Asunción Lafuente, Françoise Lala, Adriaan Lammertsma, Michelle Lax, Thibaud Lebouvier, Ho-Yun Lee, Lean Lee, Annebet Leeuwis, Amandine Lefort, Jean-François Legrand, Mélanie Leroy, Constance Lesoil Markowski, Marcel Levy, Renaud Lhommel , Renaud Lopes, Isadora Lopes Alves, Luigi Lorenzini, Adrien Lorette, Emma Luckett, Marie Lundin, Marie-Anne Mackowiak, Vincent Malotaux, Richard Manber, Nikolay Manyakov, Pawel Markiewicz, Paula Marne, Marta Marquié, Elvira Martín, Joan Martínez, Pablo Martinez Lage, Sophie E Mastenbroek, Aurélien Maureille, Karen Meersmans, Anja Mett, Joseph Milne, Carolina Minguillón, Marc Modat, José Luis Molinuevo, Laura Montrreal, Christian Moro, Theresa Müller, Graciela Muniz, Henk Jan Mutsarts, Ted Nilsson, Aida Ninerola, Agneta Nordberg, Wilse Novaes, Joao Nuno Carmelo Pires Silva, Greg Operto, Adela Orellana, Pierre-Jean Ousset, Olivier Outteryck, Amandine Pallardy, Alessandro Palombit, Ana Pancho, Martin Pappon, Claire Paquet, Jérémie Pariente, Florence Pasquier, Pierre Payoux, Harry Peaker, Esther Pelejà, Delphine Pennetier, Alba Pérez-Cordón, Andrés Perissinotti, Matthieu Paul Perrenoud, Sandrine Petit, Grégory Petyt, Julia Pfeil, Blanche Pirotte, Sandra Pla, Sonia Plaza Wuthrich, Lea Poitrine, Marianne Pollet, Jean-Benoit Poncelet, John Prior, Jean-Pierre Pruvo, Pauline Putallaz, Mathieu Queneau, Lisa Quenon , Andreea Rădoi, Marie Rafiq, Fiona Ramage, Maribel Ramis, Michael Reinwald, Gonzalo Rios, Craig Ritchie, Elena Rodriguez, Adeline Rollin, Olivier Rouaud, Simona Sacuiu, Laure Saint-Aubert, Arianna Sala, Anne-Sophie Salabert, Jon Saldias, Gemma Salvadó, Angela Sanabria, Lena Sannemann, Nathalie Sastre, Daniela Savina, Irina Savitcheva, Jolien Schaeverbeke, Philip Scheltens, Carine Schildermans, Mark Schmidt, Michael Schöll, Jeroen Schuermans, Franck Semah, Mahnaz Shekari, Ingmar Skoog, Oscar Sotolongo-Grau, Andrew Stephens, Tiffany Stewart, Jennyfer Stutzmann, Murray Tait, Lluis Tárraga, Juan Pablo Tartari, Ann-christine Tysen-backstrom, Sergi Valero, David Vallez Garcia, Bart N M van Berckel, Martijn van Essen, Koen Van Laere, Jeroen van Leur, Ingrid S van Maurik, Rik Vandenberghe, Bruno Vellas, Jukka Virolinen, Pieter Jelle Visser, Zuzana Walker, Håkan Walles, Emilia Wallin, Grant Whitelaw, Catriona Wimberley, Zarni Win         , Alle Meije Wink, Robin Wolz, John Woodside, Maqsood Yaqub, Anna Zettergren, Philip Zeyen
Journal: JAMA Network Open (2023)

Importance Individuals who are amyloid-positive with subjective cognitive decline and clinical features increasing the likelihood of preclinical Alzheimer disease (SCD+) are at higher risk of developing dementia. Some individuals with SCD+ undergo amyloid-positron emission tomography (PET) as part of research studies and frequently wish to know their amyloid status; however, the disclosure of a positive amyloid-PET result might have psychological risks. Objective To assess the psychological outcomes of the amyloid-PET result disclosure in individuals with SCD+ and explore which variables are associated with a safer disclosure in individuals who are amyloid positive. Design, Setting, and Participants This prospective, multicenter study was conducted as part of The Amyloid Imaging to Prevent Alzheimer Disease Diagnostic and Patient Management Study (AMYPAD-DPMS) (recruitment period: from April 2018 to October 2020). The setting was 5 European memory clinics, and participants included patients with SCD+ who underwent amyloid-PET. Statistical analysis was performed from July to October 2022. Exposures Disclosure of amyloid-PET result. Main Outcomes and Measures Psychological outcomes were defined as (1) disclosure related distress, assessed using the Impact of Event Scale–Revised (IES-R; scores of at least 33 indicate probable presence of posttraumatic stress disorder [PTSD]); and (2) anxiety and depression, assessed using the Hospital Anxiety and Depression scale (HADS; scores of at least 15 indicate probable presence of severe mood disorder symptoms). Results After disclosure, 27 patients with amyloid-positive SCD+ (median [IQR] age, 70 [66-74] years; gender: 14 men [52%]; median [IQR] education: 15 [13 to 17] years, median [IQR] Mini-Mental State Examination [MMSE] score, 29 [28 to 30]) had higher median (IQR) IES-R total score (10 [2 to 14] vs 0 [0 to 2]; P &amp;amp;lt; .001), IES-R avoidance (0.00 [0.00 to 0.69] vs 0.00 [0.00 to 0.00]; P &amp;amp;lt; .001), IES-R intrusions (0.50 [0.13 to 0.75] vs 0.00 [0.00 to 0.25]; P &amp;amp;lt; .001), and IES-R hyperarousal (0.33 [0.00 to 0.67] vs 0.00 [0.00 to 0.00]; P &amp;amp;lt; .001) scores than the 78 patients who were amyloid-negative (median [IQR], age, 67 [64 to 74] years, 45 men [58%], median [IQR] education: 15 [12 to 17] years, median [IQR] MMSE score: 29 [28 to 30]). There were no observed differences between amyloid-positive and amyloid-negative patients in the median (IQR) HADS Anxiety (–1.0 [–3.0 to 1.8] vs –2.0 [–4.8 to 1.0]; P = .06) and Depression (–1.0 [–2.0 to 0.0] vs –1.0 [–3.0 to 0.0]; P = .46) deltas (score after disclosure – scores at baseline). In patients with amyloid-positive SCD+, despite the small sample size, higher education was associated with lower disclosure-related distress (ρ = –0.43; P = .02) whereas the presence of study partner was associated with higher disclosure-related distress ( W = 7.5; P = .03). No participants with amyloid-positive SCD+ showed probable presence of PTSD or severe anxiety or depression symptoms at follow-up. Conclusions and Relevance The disclosure of a positive amyloid-PET result to patients with SCD+ was associated with a bigger psychological change, yet such change did not reach the threshold for clinical concern.